Transition Planning for the Fully Dependent Child
Before a medically complex, fully dependent child turns 18 years old, parents need to make a mental shift to address the needs of the child as an adult. To continue making medical decisions for a fully dependent adult child, legal guardianship will need to be addressed. Also, the child’s medical care will likely need to be transitioned to adult providers. These processes can be daunting and overwhelming and parents look to providers for support. Pediatric providers need to understand the logistical and the emotional challenges faced by families. This will allow for improved outcomes and for the patient, family and provider.
1. Identify 3 essential things to consider for the fully dependent child turning 18 years old
2. List 3 strategies to create a pathway for transition of medical care from pediatrics to adult
3. Understand the supports families need during this transition process and beyond
Kerri Padget, Community Manager (Moderator)
Kerri worked with children with complex medical needs for many years before becoming a parent to one herself. Her son Kai was born with an inoperable brain tumor that took his life just after his second birthday. During Kai’s short life, Kerri focused on quality of life for her son and became heavily involved in the many facets of the palliative care community. Since Kai’s passing, Kerri has remained a part of this community through her work as a pediatric massage therapist, blogger and advocate for families of children with complex medical needs. Kerri believes strongly in the efficacy of whole family wellness and peer support surrounding end-of-life care for a child. Her personal experience gives her relevant perspective that she is always happy to share with others.
Janet M. Duncan, MSN, RN, CPNP – Courageous Parents Network
Janet is a Certified Pediatric Nurse Practitioner who helped found the Pediatric Advanced Care Team of Dana-Farber Cancer Institute and Boston Children’s Hospital. She worked as a bedside nurse and educator with families who had children diagnosed with cancer and later in her palliative care role, with families of children with diverse diagnoses of a serious illness. She continues to feel passion and find meaning in supporting families and children through her work with CPN.
Julie Hauer, MD
Julie Hauer’s clinical work, starting in 1995, has focused on the complex medical and palliative care needs of children and young adults with severe neurological impairment. Her clinical interests include symptom treatment in such individuals. She is board certified in Pediatrics and in Hospice and Palliative Medicine. Julie is currently the medical director of a long-term and respite care facility for children and young adults with severe neurological impairment and associated complex care needs. She has written a book on the medical and palliative care needs of such individuals: Caring for Children Who Have Severe Neurological Impairment: A Life With Grace.
Alyssa Siegal, MD
Dr. Alyssa Siegel is the Clinical Director of NJ Transition to Adult Coordinated Care at the Children’s Hospital of Philadelphia, a program designed to help families of patients with intellectual and developmental disabilities navigate the challenging transition from pediatric to adult care. Dr. Siegel has a special interest in working with families of individuals with Down syndrome and has been an invited speaker at regional, national and international conferences, including the National Down Syndrome Congress (2016, 2017, 2018), the Canadian Down Syndrome Society Conference (2016, 2017), and the World Down Syndrome Congress (2018). She has developed written and on-line resources, including the CHOP Trisomy 21 Toolkit for Transitioning to Adult Medical Care and the safety series, Keeping Your Special Needs Child Safe. Dr. Siegel is a member of the Down Syndrome Medical Interest Group, a Fellow of the American Academy of Pediatrics, and Clinical Assistant Professor of Pediatrics, Perelman School of Medicine at the University of Pennsylvania.
Barbara Swoyer, Parent
Barbara Swoyer is a volunteer, advocate, blogger and written contributor for the community of families caring for children with rare disease. She and her husband are the parents of two adult children, the youngest of whom has a diagnosis of Dravet Syndrome and Secondary Mitochondrial Dysfunction. Barbara is active with the Dravet Syndrome Foundation as a member of the Caregivers of Adults with Dravet Syndrome advisory group. She has a particular interest in palliative care and health care transition issues, and is a founding parent advisory board member and frequent contributor for the Courageous Parents Network.